Been a while since my last post, I've been struggling quite a bit.
So I took the advice of a few of you's guys and went back to the gp, got my app moved up and some pain relief (pregabalin 50mg x 2 p/d). The pain relief did not much at all, but I only had to suffer through another two weeks till the rheumatologist so just got on with stuff.
The pain in that two weeks increased massively to the point I missed a lot of work and wasn't able to do much indoors either. Got a wheat bag and arthritis gloves as per previous advice and although both are comforting, they don't remove the pain.
So I get a letter for my appointment, massive booklet for past symptoms and pain levels etc. Comes with an x-ray request and a blood test form. X rays I had done immediately (hands, feet and chest) but my blood form was empty. I got it the week before the appointment and it needed doing that day to come back in time, but the whole thing was blank so couldn't be done. In the end I got a print out of my last bloods and took those with me.
I've now had the appointment and am actually quite upset.
I have been advised of a few things, but am disappointed with whats going on.
I've been advised that this is most likely to be either RA, Juvenile onset Arthritis or another auto immune disease with lots of s's that I had forgotten before she'd finished saying it. Fibromyalgia is also suspected as a secondary to whatever else is wrong.
I got a big dose of steroids straight in the ass (120mg) and a new prescription for Diclofenac (100mg). Trouble is, I can't remember if this was replacing my old prescription for Pregabalin, or going with it. Got forms for a new battery of blood tests and also had another round of x-rays (this time my spine, hips and wonky butt bone).
Couple of bits of info that really upset me (apart from the lack of diagnosis or treatment);
1) Explained the great difficulty and pain surrounding anything to do with my butt bone - told any alterations or adjustments to this area are extremely painful, take a long time to heal and carry greater risks of effing everything up in the surrounding areas.
2) Told that if I wanted a Third child (which me n the hubby do) to do it now (which we are not in a position to do). As any treatment will come with medication that I wouldn't be able to do this with. She said its Fetal abnormality / Miscarriage type of drugs that will be needed.
3) The medication and advice I've been given is for pain management only. Whatever is happening to my joints will keep happening, it just apparently wont hurt.
So after all the waiting and the pain and the not knowing whats wrong (with the terrifying anxiety that comes with it) , my appointment has resulted in waiting another 6 months to see what happens. With how quick my hands/knuckles are loosing range of movement and how quick the pain is spreading, WTF kind of state will I be in in 6 months?
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Ginge_31
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Why do you have to wait another 6 months? If the doctor feels that an inflammatory arthritis of one sort or another is likely then normally you would have a follow up in 6 weeks or so to reciews x-rays/blood tests etc. Can you check this with the hospital/gp etc? Especially if they are indicating that they would want to put you on a drug like methotrexate (can't take it unless also on good contraception).
To be positive, you may well find that the steroid kicks in overnight and you wake up tomorrow feeling a bit better. And another positive is that other women in here have gone onto the strong drugs until the disease was controlled, and then came off them at a time of their choosing in order to get pregnant. There may be a reduction to your fertility, but also may not....
And when I was diagnosed I really feared damaged joints as the pain and inability to do anything was so bad. I couldn't hold a cup, walk more than a tiny bit, etc etc. I couldn't believe that I could recover - but I did.
Get back to GP/hospital and push for a follow up appointment.
Hi Ginge_31, I’m sorry that you feel upset after your first rheumatology appointment. Unfortunately it can sometimes take a while to get a firm diagnosis depending on which auto immune disease you have but your rheumy has given you a steroid shot which should help you so hopefully you will start to notice an improvement in symptoms soon. If you are not sure of anything you could ring the rheumy nurse and she can check it out for you. There’s a lot to remember and take in on your first appointment.
Sadly a lot of drugs can not be taken when pregnant or trying to get pregnant. I had to make the hard decision not to have more children so I could tackle my aggressive RA. It is upsetting but I knew I would deteriorate so much more if I didn’t do something and really the decision was a no brainer in the end. Talk to your husband about it, you have a while before your next appointment so you have the time to discuss what you will do.
The diclofenac you are taking isn’t just for pain relief, it’s an anti-inflammatory too so should help you. Did the Rheumy tell you it was just a painkiller?
Do keep coming here for support in the meantime. Waiting for new meds to work is frustrating but hopefully you will feel some improvement soon x
It's my own fault I know. The pain was building and I've basically been pushing through counting down to this appointment. I got my hopes up that with ll the scans and bloods already done and sent over and the symptoms all being present over the last two years, I'd get some sort of result or idea of solution.
The appointment was Friday and I am feeling results from the injection. Its greatly reduced the pain in my hips, knees butt bone and neck. Its the hands that really bother me though. I type all day at work, so that was really the area I was hoping would calm the hell down.
The rheumy said she was also the maternity doctor so I'd still be under her care. She said you can do later but it is difficult, especially when we're not aware of the exact cause. She advised get knocked up know, while we're still investigating and then i can pop and start the right treatment. We have two children already, two years apart. Ideally was looking for near the same gap so that would put me falling around sep. Also to take into account is that my symptoms improved massively during both previous pregnancies, and those were both low risk and usual. So I get why the advice has been given and it does make sense, just a punch to the tit while I was already down.
It helps to know that about diclofenac, thank you. She very well may have told me, it was a lot of information thrown in my general direction all at once.
I've been in the docs to see if they know what I'm meant to do with this prescription, they don't, but they gave me all the contact info on who does so I can sort it in the morning.
I'm keeping my fingers crossed it all calms down, I'm not sure I'll still be sane in 6 months 😂
It’s really not your fault Ginge, we all try to push on through things and not give in. I still do it and I was diagnosed 29 years ago.
I’m glad that you are getting some benefit from the steroid shot. It’s difficult when it affects your ability to do your job and the repetitiveness of typing probably aggravates it.
There is a lot of information given and you’re expected to take it all in and make decisions at your first appointment when you’ve probably still not come to terms with the possibility that you have an auto immune disease. All adds to the stress you are already under.
I’m glad you have the number to find out the info you need and hopefully that will make things clearer for you.
6 months is a long time to wait personally I would push for a review to be seen quicker. After my first rheumatologist app I was seen 6 weeks later as inflammatory arthritis was suspected, I was then diagnosed with PSA an started on methotrexate straight away. I was told it was vital to slow down the damage to the joints an get the arthritis under control asap.
The steroid injection helped me greatly, I got another 1 at my review to help me until methotrexate kicks in. So hopefully that helps you!
Also my rheumatologist did discuss family planning an if we wanted to try for another baby I had to stop methotrexate for 3 mths before trying an to discuss the matter with her first. So try not to worry, I know it's easier said that done. But do try an get an earlier app cause like you said what state will your joints be in 6mths?
I would get a second opinion as if she was a maternity consultant as well she can't know a lot about ra. You shouldn't have to wait six months if your in so much pain darling.xxx
Shes the maternity consultant within the Rheumatology department - as in shes a rheumatologist firstly, and also offers additional support for all the pregnant women under the departments care.
That may have made less sense that what I originally posted :S
I've been told by several other nurses and technicians (as well as my new decent gp) that she is the best available to me.
I had my last steroid jab a few months back and had a whole four days relief.
The more you have the less effective they become...sad fact.
That was my fifth, by the way.
The negative aspect (Yeah, I'm a bundle of laughs, me) is the potential side effects, which rise exponentially after each injection, so I looked at how effective it was versus payback and decided it wasn't worth it.
As for your hands, I found running them under cold water helps me.
Not sure if it reduces inflammation, but it stops me screaming like a big girl's blouse and I can then handle the pain in a more manly fashion.
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